I Want To Hear You

speakup_1280-2015072110052777Last week, when I shared my post, I felt empowered.  I felt like I had faced my fears by writing about the thing that scared me the most.  I realized it wasn’t about how people reacted about what I had to say; it was about having the courage to tell my story. Right away, I went to write my next post.  I had a rush of ideas about how I would write about my anxiety and I knew just how I was going to do it.  I even wrote a first draft of that post. I am going to have to save that draft for another time.

In the last few days, I have thought a lot about about having a voice, speaking up, and advocating for yourself. I’ve been contemplating what that really means.  Having a voice means you are making the choice to take on change, to be responsible for your opinions, desires, and facing the fact that NOT EVERYONE will agree with you. When you don’t use your voice, you still have a choice.  You are choosing not to participate in the conversation.  If that conversation is about you, you are giving others the right to speak for you and make decisions about your life.

For some of us, it is hard to make a decision, stand behind our words, and have the courage to speak up. Trust me, I am extremely familiar with this difficulty.  Most times, I have a hard time sticking with my decisions about what I want to do for dinner. When it comes to my health and well-being, I have no problem speaking up about what works for me and what I will and will not accept. This is my personal victory.  I see what I want, research and gather information, and develop a plan, and try to implement it.  While the plan might not work out, I know the key to finding my eventual success is to keep going.  These actions are a living example of the SPEAK model of self-advocacy I developed to guide myself and others to lay the groundwork and create a path for action as a result of having the courage to speak up.

This week, I experienced feeling like my voice was tested. I felt like I was being told how to feel.  I was told to feel angry about cancer and like I had been cheated, not given options, and had been placed in the minority.  The thing is, I don’t feel or think any of these ways about my healthcare.  It is insulting when an organization or public figure says what they are saying represents the entirety of a group.  I have a feeling in today’s political climate, most people have felt this way in one form or another. This is not about those politics. This is about making the choice to be heard and following through with that choice when faced with oppression.

NO ONE has the right to tell you how YOU think or feel.  That is the wonderful thing about our personal thoughts and feelings. They are always ours.  Will they be challenged? Yes! Will someone persuade you to think or feel a different way? Maybe.  Something awesome is you may even change your mind based on new information. The beauty is it is YOUR CHOICE. Because thoughts, feelings, and opinions are internal and personal, we don’t give those up.  We do however, run into times when what we do give up is our voice.  Whether we feel restricted, unheard, apathetic, or bullied, somehow we manage to lose our voice, or even give it away.

I am not saying people are not ever angry, cheated, not given options, and are placed in minorities.  I am speaking for myself.  I will not be told how I think or feel.  I was doing just fine until I was told I am angry.  I am not angry I had an experience with a life threating illness which might have been different than the experience of others.  I was given options about treatment.  I was treated with dignity. I was cared for by a team of professionals who made time to hear what I had to say and put in an extra effort to provide me with information and research to make decisions which felt right for me.  I was given fertility options. I was heard when I said I was done receiving chemo.  This was respected and my treatment ended. Some of this was the good fortune of having a team of excellent professionals. A lot of it was because I made it clear from day 1 that I would be my biggest advocate.  I am not a doctor.  I don’t have a background in treating illness.  I highly respect the people who do.  I respect them even more when they recognize I am part of the team, I have a vote, and I can ask questions.

When thinking about speaking up and having a voice, the only thing frustrating the hell out of me right now is that my voice about self-advocacy isn’t loud enough.  I have not quite figured out a way to get in touch with others to provide my services to strengthen their voices. I have very strong thoughts and feelings about providing others with education about how to SPEAK and to have the choice about when they want to do it! I have no interest in speaking for others.  I am invested in the victory of seeing others speak for themselves.  I want this so badly and I will use my own advice, KEEP GOING,  and push through my frustration about my voice which is not yet loud enough to be heard. One day, it will come out LOUD and CLEAR followed by the echoes of others who have found a way to be heard!

Be Well and Be Heard

The Shocking Truth: How ECT Saved My Life

FB_IMG_1434667022165Fall 2003, I was in a very deep, uncomfortable depression. I was 21 and at the point in my life where I was “over” dragging around the bipolar diagnosis I had received almost 5 years earlier.

Having moved to a city, I felt a burst of opportunity that was weighed down by the darkness of my mind. Unfortunately, I had a brief struggle with suicidal ideation. I  knew I had to keep moving forward. The effort I made wasn’t for me. It was because I was supported by a team who would not let me fall. At a very frustrating point, my mother exclaimed, ” We are on a team! I’ll never quit, so neither can you!”

The depression dragged on into the spring. Eventually, I was hospitalized and was at a place of hopelessness and depression.  There wasn’t a medication that was working and my doctors were stumped. At one point, someone suggested Electro Convulsive Therapy (ECT). This is also known as “shock therapy”.

I wasn’t thrilled based on what I had seen in movies like, One Flew Over the Cuckoo’s Nest and A Beautiful Mind. Turns out, I wasn’t the only one with these negative images in my mind. No one I talked to knew what ECT was. It was so scary to hear that my brain was going to be shocked and it wasn’t guaranteed to work. It was the only tiny glimmer of hope I had to pull me out of this unfamiliar, terrible darkness.

Let me make this Crystal Clear, ECT is NOT like it is portrayed in the movies! It is also not always effective for everyone.  I was taking a chance by doing the treatment. Eventually, it was what saved my life and turned my darkness into light.

I was told the average amount of ECT one might have is 6-9 treatments. Progress was slow at first, which was a little discouraging. It took me 23 treatments over the course of a few months to get to a place of stabilization. I was going in 3 times a week most weeks. I was cared for by an extremely kind, enthusiastic team of medical professionals who gave me so much love and saw my potential for greatness. They were patient with my unforgiving veins that were not often willing to receive an IV without a few attempts. They enjoyed my unique sense of humor and youthfulness. While I was a pleasure to be around, they always told me they hoped they wouldn’t see me again. This was because they wanted me to feel better.

The treatment itself was very humane. It only took a few minutes. I was put to sleep and a teeny tiny shock was administered to my brain to do some miraculous, hard to explain thing that somehow reset some of my “wiring” to get my mind moving in a more healthy direction. Luckily, it’s not my job to explain the actual procedure. The most time was spent in preparation for it and recovery from anesthetic drugs.  Imagine this process 3 times a week. My parents were extremely strong and would take me at 5:30 in the morning to my doctor 30 minutes away. They would sit there until I was done (usually around noon).

The recovery after each treatment was a difficult process. When I got home, I would sleep for a few hours, wake up with a pounding headache and face the fact that my short term memory was pretty much gone. After I got over how terrifying it was for me not to remember what happened moments before, it became kind of funny. From the beginning of my long medical history, I have easily been able to find humor in most circumstances. Besides, it was a cheap trip to the video store when I could watch the same movie over and over and have it be like the first time I was seeing it every time!

When I was finally done with treatment, I felt like a whole new person. I was amazed that these procedures had ultimately SAVED MY LIFE! I did not even have to take medication for a few years!

This was not the end of my struggle; it was a re-introduction into a life I had known full of joy and hope.  Every so often for the next few years, I would go in for a few rounds of “maintenance”. Those times were not scary because I knew what was going to happen and knew I would feel better.

It has been 7 years since my last treatment (which was inconvieniently during my second semester of grad school- which I completed 2 years later). I know in my heart that it is my duty to speak up and erase the stigma that accompanies ECT. To tell you the truth, that is really hard. It is hard to combat the “shock” on people’s faces when you tell them what you have been through. People hear what they want to hear. They are busy being uncomfortable about what they are hearing, that the fear overshadows the amazing fact that I am standing right in front of them and using all of my courage and confidence to tell them how healthy and well I am after receiving these treatments.

While I continue to fight for my own life, I want so badly to advocate for taking chances, moving past stereotypes, and doing the unpopular thing. It has been 14 years since my first treatment and this is the first time I have the courage and vulnerability to write about this knowing I have no control of who will read it once it is published. It is important for me to support others, share a success story, and knock out stigma. This is no easy feat and I have dedicated my time to supporting others and empowering them to speak up for themselves and own their wellness. I hope this helps to grow your compassion, love a little more, and join me in this difficult fight to erase the stigma around mental health issues.

 

 

Chronic Illness Doesn’t Mean No More Fun

As we know, having a chronic illness sucks.  Just because it sucks doesn’t mean we still can’t have fun. One of my favorite articles I came across is I Won’t Apologize For Having Fun While Chronically Ill. This article emphasizes the importance of not feeling shame when you continue to live your life while having illness.

When I was recovering from chemo and living with Depression, Anxiety, Chronic Pain, and undiagnosed Celiac Disease, I wasn’t about to sit at home all day and feel bad.  I wasn’t working because of my physical stamina, anxiety, and remaining side effects from having cancer.  This didn’t mean I had to feel guilty because I didn’t have a “normal life”.  I saw it as an opportunity to enjoy my life at my pace doing what I was comfortable doing.  One of my favorite things to do is travel.  The day after my last chemo, I hit the road. Obviously, I had to have the permission of my oncologist and I wasn’t exactly going hard.

My first trip was with my awesome sister.  It was summer and my relatives live on a lake during that time.  It is a peaceful place to be where I could do as much or as little as I wanted.  I wasn’t allowed to go in the lake because my immune system was so low and so was my blood cell count. My sister was very understanding about having to take a few extra steps and precautions.  We had a lot of laughs while she wheeled me through the airport and waited for me when I was tired and moving slowly. When I got to the lake, I spent most of my time in the shade watching the activity in the lake.  I love the water and just being near it made me content. I knew that the way I would heal would be going to visit my friends and family and relax and enjoy my time.

 

My next trip had been planned for 2 years.  I went to an Up with People reunion at Disney World.  I shared a hotel room with one of my closest friends who I hadn’t seen in years. While I needed time to rest, I also needed to be with friends, go on adventures, and make memories.

Next, I went to Florida to spend time with my dad and his girlfriend.  That year, I took 3 trips to see them.  They live in a community that has more fun things to do than I can count.  I spent my days working out in the pool, visiting with the neighbors, going to the town square to watch live music and dancing, enjoying movies, resting, and driving around in a golf cart.  There was no pressure to be at a certain pace. Some days I had energy and other days I couldn’t do much besides rest.

After going to Florida for the first time, I went to Hawaii to attend a surf camp with 20 other young adult cancer survivors.  I made lifelong friends, tried new things, ate amazing food, slept under the stars, and consumed endless amounts of shave ice.  Not only did I go on that adventure, but in the 1.5 years since that trip,  I have had 5 friends that I met come to visit me here in Colorado.

Between trips to Florida, I went to see my friends in Virgina for an annual holiday weekend.  It was fun and exhausting to have a whole weekend of events.  My friends were understanding and didn’t give me a hard time about my lower energy levels.

While making the rounds, I went to Sedona, Arizona 2 times.  I went to visit my brother and sister-in-law both before and after they had their new baby- my first niece.

Another fun- filled vacation was going to my friend’s destination wedding in Mexico.  It was an awesome time to reconnect with friends, have fun near the ocean, laugh a ton, dance, eat good food, and celebrate love.

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I have had some local adventures- a yoga retreat, a weekend at Mt. Princeton Hot Springs, SO MANY weekends with my amazing mother, and countless visits from friends and family from all over the globe.

I already have 3 trips planned for the next few months.  I will go to another surf camp for young adult cancer survivors, a retreat in Oregon, and back to the lake to see my family.

After seeing all of my adventures, one might think I spent money I didn’t have, I was well enough to go to work, and that it isn’t fair that I get to do so many fun things.  Here is the truth: I am the cheapest traveler you have ever met. I make CHOICES for my own wellness. These are choices most of us have.  We have different responsibilities, values, opportunities, obligations, dreams, goals, energy levels, and priorities.  It is totally ok with me when others follow paths which are different than mine. Most people do. My hope is that people live lives and make choices that are not criticized.

My friends and family are the most valuable people I have.  My priority is to spend time with them.  Work was always going to be there.  It is here now.  I have figured out a way to work and still have the lifestyle I desire. While I have moments of guilt about how I spend my time, I don’t have any regrets.  That guilt does not remain for long.  I am fortunate to live the life I do. It is not all fun and games. I didn’t choose to have chronic illnesses. I choose to be resilient, advocate, educate, work hard, play hard, acknowledge when I need to rest, go to endless appointments, and love and laugh so hard I might burst.

DO THIS: Live a life you love! Don’t apologize, and…

Be Well

 

 

 

 35 and Still Alive!!

IMG_20170407_230428_112April 8th was my birthday.  I love birthdays.  I love them even more now that I have made it through some life threatening stuff. Some people hate birthdays. For some, it is because they really don’t like the attention.  For others, they don’t like feeling old. 35 seems like a milestone…I feel that way about all of the multiples of 5 birthdays. I’m not sure why.  This birthday kind of feels like a re-birthday.  I have come so far and grown so much over the last year.

This weekend, I spent time with my family and had some time to think. It isn’t unusual for me to spend time with my family, they are part of my support system. They let me be me. When I need to rest, they don’t make me feel like I should push through my fatigue. They tell me to rest and ask if they should wake me up or just let me sleep until I am ready. I don’t feel pressure to do anything but take care of myself. When I am with my family, the priority is to share stories of our lives and laugh. We laugh about everything. Everyone in my family is extremely funny in their own way. It is enjoyable to laugh with all of them.

Sometimes I feel guilty about how I spend my time in other parts of my life. I feel more pressure to be productive, perfect, and to please. I compare my pace with the usually faster pace of others. I tell myself I should do, say, or be certain ways. My favorite expression I use when I am counseling is, “Don’t should on yourself”. Trust me, it is easier said than done.

Acceptance is a big part of wellness; so is authenticity. In my work, it is so important to me to encourage others to find a comfortable way to be accepting and authentic. I am most effective when I follow my own advice. I want to be successful with my business SO BAD that I sometimes feel my authenticity slip. I get trapped in the “shoulds”. When you market your business, you “should” do it a specific, proven way. When you write a blog, you “should” cite and link tools for your readers. Your readers “should” be called to action after reading what you have to say.

When I step back and read what I have written, I feel my authenticity return. The only thing I “should” do is be myself. In the past, I have been successful being honest, raw, direct, and authentic. I’ve been told it is refreshing and unexpected. It is rewarding and, at times, painful. I choose to show others what it’s like to be me whether is is good, bad, ugly, silly, sad, confusing, offensive, or exciting.

To be effective and successful, I must be me. This means sharing hurt and frustration, celebrating my strengths and successes, having difficult conversations, searching for information, and taking time to rest. Sometimes, I don’t want to share resources or links like I “should”. I just want to tell you what it is like to go through my journey with my chronic conditions. I want to inspire and empower you to do your own work, congratulate yourself for finding an awesome resource on your own, and invest in your own wellness. I have hope that my authenticity will be “enough” and I don’t need to answer to the “shoulds”.  I can follow my intuition and heart about how I want to serve others.

I want others to speak for themselves, be their own advocate, and fight for what they want. I took so much time developing my SPEAK model to teach others to do just that. The easiest way to teach others is by example. I model how to be a good self-advocate. It isn’t always easy to be honest and raw. Facing that fear has, at some points, been the push to accomplish what I need. To do this, I move past the “shoulds”, face my fears, follow my heart, and wait to see the positive results that come from the process.

So why do I love birthdays so much? Because I can celebrate that I have lived through another year full of experiences. I have lived an additional year with wisdom, ideas, disappointments, successes, perspectives, and hope. How amazing! This is what propels me forward. Every year, I will get to grow more, laugh more, speak more, and continue to practice what I have learned in years past. It is nice to have a marker like adding a number to my age to celebrate what living life means to me. More chances to be accepting and authentic. More perspective…

Be Well

Control

 Two weeks ago, I was diagnosed with Celiac Disease. Don’t go feeling too sorry for me. I already know how to adapt and adjust to a new diagnosis. Not only do I have the tools: I’ve built myself a pretty fancy shed to house all of those tools. In that shed, I keep my care team, my loved ones, my energy reserves, my strength, my confidence, some tissues, and some candy (now it has to be gluten free).If any of you are getting a literal picture of all of those things actually crammed into an actual shed, my metaphorical writing just may not be for you. On the other hand those who are having the visual for the sake of amusement, don’t let me stop you.

Of course I have a feeling that these chronic conditions might be related. Anyone with multiple chronic conditions may have felt that way at some point. That may also lead to a lot of self blame, shame, hatred, heartbreak, frustration, judgment, and every other terrible bleh thing to put on one’s self. I have been hard on myself about what I eat, my level of activity, how much I sleep, how hard I work, what others think of me, and worst of all, what I think of me. You can imagine all of the ugly crying that happens when I let those thoughts take over. That cancels some of the despair about how others are judging me. When I go through all of this, there is no room at all in my mind to consider my judgements of others. I am just focused on MYSELF. Sound familiar?

This is where the hard work comes in with my mental fitness. In all of the chaos, I would really like some control. To be able to find that control, there is a bit of sorting out that must happen. What do I want to control? What am I able to control? Who do I want to control? How do I want to have control? When do I really want to have control? You get the picture. Most of us first started learning the scientific method at an early age when we were taught the investagaive questions: Who, What, When, Where,Why, and How. 

So, here’s what I know. I can definitely control that shitstorm of a runaway train of thought. It is not as easy as putting on the brakes. It involves all of those handy tools, patience, multiple attempts, and being proactive. It is nearly impossible to figure out how to use a tool in a moment of panic if you have never even picked it up to learn how it works. With gratitude to the many obstacles and setbacks in my life, I have at least picked up some of those tools to explore what the heck they do.

When I listened really hard to figure out what my body was screaming for me to understand that it needed, I had to stop resisting. I had to acknowledge that my mind, body, and spirit are all connected. I had to let them work together instead of pulling them apart.

It has been so hard to slow down and offer myself what I really need. I started by trying to enjoy months of intensive therapy. Because I commited to that part of my healing, I was gifted with exceptional experiences. This therapy was different than how I had been trained in my counseling program. It gently guided me through new experiences to connect my body to my mind and soul and to invite them all to be part of the process. Now I have less dissociation and more connectedness.

I have done other things to nuture myself like acupuncture, changes in how I move my body, massage, and taking quiet time alone. I am also mostly able to recognize how my body feels when I am stressed, impatient, angry, and hurt. I have tools like breathing and visualization to TRY to put to use in those moments.

BUT IT IS STILL HARD!! I think it will be until the day I die. I don’t even want to go into the complexity of trying to control others when I know we all struggle to some degree with having to build our internal locus of control. In building my business, I have spent hours crying, being pissed, and fuming when I can’t figure out why the piece of shit computer that I thought I reasearched is…a piece of shit. I can’t figure out why I have spent countless hours (perhaps days) online or on the phone with “customer service” just to figure out how to add something as simple as a “follow” button to the blog on the service I tried to build my blog on 2 attempts ago.All weekend, I have been consumed by these technical problems just so I can post my blog for my regular Sunday night blog. I have missed the concert I was going to attend last night. I did not go for a walk with my friend. I have been an absolute nightmare to my roommate who is graciously taking his own time to help me solve my computer problem. 

WHERE IS THAT DAMN SHED FULL OF TOOLS NOW?? I hear my body. My shoulders are tense, my head is aching, my words are sharp, and I just feel depleted. I can now longer wait until the …”as soon as I fix this” excuse to get in my way. I must walk away, listen to myself, and go to the movies. I must just post this blog from my phone and not obsess about how to get you to see this by trying to create visibility on social media. I must just walk away, take care of myself, and…

Be Well